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Death seems to be the hardest word in end-of-life planning


For Inside Jersey

One night about 30 years ago, Nancy Gross' 74-year-old father didn't come home. As the evening wore on and Gross and her mother grew increasingly worried, they began calling hospitals.

When they finally located him at Bellevue Hospital in New York, they learned he had died suddenly of a heart attack while in the subway.

It was a devastating experience. But almost as difficult for Gross was the realization that her parents had never talked about, or planned for, their deaths.

"It was a pivotal point for me," says Gross, who soon afterward began a habit of volunteering with palliative care and hospice organizations that continues to this day, even as she works as a humanities educator at Overlook Medical Center in Summit. "My parents were devoted to each other and my mother was absolutely shattered. She said 'How could this happen?' Death wasn't something they had talked about or planned for. It wasn't something that was in their conversation."

Gross, 66, who cared for her mother through her last illnesses until she died in 2009 at age 91, says her experiences with her parents changed her life, guiding both her career choices and her volunteer activities. It also has made her an advocate not only for advance care planning around the treatment and care desired at the end of life, but also for the importance of sharing those wishes with the people you love.

"I don't think conversations were as explicit back then," she says of her parents. "My husband and I talk about these things much more openly now. We have long-term care insurance and advance directives that we completed with our lawyer. But about five years ago, I woke up very early one morning and wrote my own advance narrative directive. I wanted to tell people more specific things that I would like to happen, not the things I would not like to happen."

To be sure, death is a difficult topic, and planning for one's death is harder still. Many people will never be able to have such conversations, much less make decisions about the medical treatments and care they would like to receive, or not receive, and then share their wishes with their loved ones.

Even Gross, who had many conversations with her mother throughout her last illnesses and hospitalizations, and feels comfortable about the care her mother received before she died, says that circumstances may dictate something different.

Familiar documents such as advance directives, though drawn up by an attorney, are not always available to, or legally binding on, a physician. And in emergency situations, EMTs and physicians, says Gross, are trained to do all they can to save a life regardless of what the results might be for someone already critically ill.

"I may add an addendum to my own advance directive, spelling out even more specific things I would like to happen and things I would like not to happen," she says. "But that doesn't mean it's going to happen that way."

THE CONTROVERSY THAT ERUPTED in 2009 when former GOP vice presidential candidate Sarah Palin famously, and falsely, claimed that under the Affordable Care Act government "death panels" would determine the fate of senior citizens and the disabled, seems to prove that most people don't want end-of-life decisions imposed on them by others.

Indeed, people whose work involves caring for those with advanced illnesses through palliative or hospice care say surveys consistently show that most of us think advance care planning is a good idea. It's just that we don't do it.

Consequently, it's quite possible that in the closing days of our lives, when we are least able to articulate our wishes, many of us will receive treatments we might not want in places we would rather not be.

"People think that if they don't talk about something, it isn't going to happen," says Jay Lippman, medical director for Bayada Hospice in Jersey City. "They also think that if they talk about something, it will be encouraged to happen. People always think that it is too soon to have the conversation. But the truth is that it is always too soon until suddenly it is too late."

If these conversations prove difficult, it may be possible to find a caring professional outside the family, such as a social worker, who can help. Increasingly, physicians are being viewed as those best able to answer questions about the realities of end-of-life treatment and care.

This was underscored in 2016 when Medicare, for the first time, made it possible for physicians to bill for time spent in advanced care planning conversations with patients.

In the first six months of 2016, according to the latest figures available from the Centers for Medicare and Medicaid Services, almost 15,000 Medicare beneficiaries in New Jersey participated in an advanced care planning conversation with their physicians.

Waiting until you are old enough to participate in Medicare, however, is not the best time to start advance care planning, says Stephen Goldfine, chief medical officer at Samaritan Healthcare and Hospice in Voorhees. Goldfine, who leads training sessions for health care professionals in how to communicate about end-of-life care, says he believes family physicians should broach the topic during every annual physical exam, along with discussions about such things as diet, exercise and the importance of wearing a seat belt.

He also believes this conversation should start at age 18, when people legally become adults. Goldfine notes that some of the most highly publicized and emotionally charged end-of life court cases, including Karen Ann Quinlan and Terri Schiavo, involved young women in their 20s, who fell into chronic vegetative states before indicating how they would like to be treated in such a situation.

"Eighteen is a tough time to have that conversation," he says. "But it is sad for me to see a 29-year-old in a chronically vegetative state being kept alive (on machines). It may be my personal bias, but surely we should ask: 'Do you want to be kept alive, or just allow us to keep you comfortable until you die?' "

FOR MANY PEOPLE THE NEXT STEP is to visit an attorney, who can prepare an advance directive, which addresses an individual's wishes for treatment if they became incapacitated and could not speak for themselves. Another legal document, the do not resuscitate order (DNR), specifies that an individual does not want cardiopulmonary resuscitation (CPR) if his or her heart stops.

For those who prefer to go it alone, another option is a widely used document called Five Wishes that is offered at for $5. It substantially meets the legal requirements for living wills in New Jersey and 41 other states, and also is a way for adults to spell out how they want to be cared for in case they become seriously ill or incapacitated.

It requires a signature and recommends two witnesses, unless a state's requirements are known to be different.

But the most important step, says Jeanne Kerwin, manager of  palliative care and bioethics at Atlantic Health System, is to create a health care proxy that designates a person who should make health care decisions for you if you are unable to do so yourself. (Five Wishes allows you to designate a health care agent.)

Then, she says, make sure that person knows your wishes.

"I've been in situations with patients who had health care proxies and the person who was designated is standing by the bedside and says they never saw the document," she says. "I've also had a lot of conversations with family members who had to make decisions to take their loved one off life support and had no idea what that person would have wanted. Those kinds of decisions can result in some very complicated grief. It is a gift for people to have these conversations, so that the family does not feel they have that burden on them."

A new type of advanced care planning document is intended for people in the last year of their lives. Called the Practitioner Orders for Life-Sustaining Treatment (POLST), it provides a structured way for people with advanced illnesses to express their wishes about end-of-life care, and for physicians to help -- rather than direct -- them as they work toward those decisions.

The POLST is a medical order that must be signed by, and completed in consultation with, a physician or advanced practice nurse. Many hope the POLST will help reduce the number of people who receive intensive, expensive and often debilitating medical treatment in the waning days of their lives.

"It is a good thing that people are writing and talking about this," says Lawrence Downs, CEO of the Medical Society of New Jersey. "This is not a conversation anyone wants to have, but it is infinitely better to have your wishes known and avoid the medical futility of being put under treatments that have no clinical benefits. If we can do 30 percent better, we'll still be doing a heck of a lot better than we are now." 


Training in end-of-life care has not traditionally been part of a physician's medical education. But in 2015, two hours of such training became a continuing medical education requirement that all New Jersey physicians must fulfill every two years when they are relicensed.

The requirement is intended to help address a concern about the way in which many N.J. residents receive medical care at the very end of their lives.

"If you look at the metrics around how states do with people at the end of life, whether it is days in the ICU or time of referral to hospice, chemotherapy administration within the last month  of life, or other things that we know just shouldn't be done, New Jersey does among the worst in the country," says Lawrence Downs, CEO of the Medical Society of New Jersey, which has helped put together a leadership academy that, this year,  is  looking at how to improve the cost and quality of end-of-life care.

"A lot of effort is going into making sure we get to the point where people can outline their health care goals as early as possible, and get those conversations out of the ICU."

Another hope for improving end-of-life care in New Jersey rests with a new advance care planning document called the Practitioner Orders for Life-Sustaining Treatment, or the POLST.

The POLST, which is intended for people with advanced illnesses or chronic medical conditions who are within a year of their deaths, must be prepared in consultation with, and signed by, a physician or advanced practice nurse.

The POLST allows individuals to articulate their overall care goals and to indicate what degree of medical intervention they want, whether they are willing to take fluids and nutrition through a tube when they can no longer take them by mouth, and whether they want CPR to be administered if their heart stops.

Most importantly, unlike an advance directive or living will, the POLST is a medical order that must be followed by anyone who provides care for that patient. It is patterned after similar documents now found in more than 40 states.

Although it was originally envisioned that people would carry the green, one-page form with them, the New Jersey Hospital Association is working to digitize the POLST so an individual can elect to have it made electronically accessible at any hospital and by any physician in the state.

The NJHA is also developing an app, called emPOLST, and is in the process of setting up a pilot program with a small group of hospitals to test the electronic format.

Betsy Ryan, CEO of the hospital association, says that the NJHA has been encouraged by the support and interest it has received from organizations across the state.

"There has been good buy-in from the palliative care community and the hospice community and a lot of other organizations across the state," says Ryan. "But honestly, for me, this is all about the patient's choice. After consultation with a physician, this helps ensure that a patient gets the care the patient wants at the end of his or her life."



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